Category: chronic pain

Today was going to be a low-key but productive day. Between pain and exhaustion from the last few days (two furniture tasks on Sunday, then appointments all over until yesterday), and shitty sleep…. well… yeah. (Yes, still crowdfunding….)

The stress of this year so far has weighed down on me… considerably.

I have days, much like today, where my intent from the night before is to get some sleep, then get up, run an errand or two, do some writing or editing, search for jobs, and generally do things that need to be done.

But then I’m woken up before dawn by a certain 14lb feline sitting on my full bladder…

I want to be able to function earlier in the day… but the fucked up sleep cycle of depression messes me up. Me, and others like me, may sleep for the better part of 12 hours some days, but it’s fitful at best, and leaves us in a vicious cycle of shitty sleep and no energy to do things once we do get upright.

I want to do more. I want to spend an hour or two in the morning editing or writing… then going on with the rest of my day with errands and stuff… but depression stifles the physical ability to get going. It isn’t that I don’t WANT to do these things… I have the desire… it’s the physical energy to get up and do them.

It’s like there’s a wall that depression built. I’m on one side of it and all my hobbies and interests are on the other side. I can see them, but there’s no way around or over the wall. I can try to chip away at the wall to break it down, but if I stop and rest for a minute, the wall heals itself as if nothing had happened.

Tomorrow, I may have a decent day. Likely not starting very early either, but one where I can get things done.

Sure, I could put on some happy face mask and pretend like everything is all hunky-dory and life is awesome… but it isn’t and I won’t.

I should be able to get back up to speed tomorrow. I had two exhausting tasks yesterday and then a dentist appt today. I’m going to the OHSU dentist school clinic, so appts aren’t some half hour block… they last an average of 2-3 hours. Today was the first stage. A thorough exam of what work has been done and what needs work. Next one is more in depth assessment and then a treatment plan…

Yesterday’s tasks will net me a good chunk of funds, but I’m still roughly halfway from what I need to get storage caught up. Any help is greatly appreciated. Either the YouCaring campaign that’s an external link up in the menu or the PP donate button. I really want to get it caught up soon… like really soon.

Some of the padding is to cover September. Some is (ideally) to also help with getting some essentials food stamps don’t cover such as cat litter and canned cat food. I also desperately need to replace my sneaker slides… they’re at least 11 years old, more like 12 or 13, and are falling apart in a massive way.

I have a few post ideas floating around in my head… but I’m on pain meds at the moment so me blogging those topics while on meds is not the best mix…

I’m gonna head offline and lights out. This Dragon needs some more sleep. I was damn close to falling asleep in the dentist chair today.

Yes, still need to take care of storage. There’s a link to the new YouCaring campaign in the menu, and in the sidebar, the PP donate button is always active.

I’ve posted in the past about how hard it is for me to deal with crowds and being on public transit. My anxiety about crowds and such has gone up even more since my C-PTSD was massively triggered last November. There are few men I know that I allow to hug me now, and even many of them have to still ask for permission. Or they at least ask even though I’ve told them they’re on the “approved list.”

I’ve gotten to where even sitting next to someone on the train or bus grates on my nerves and pushes the hot buttons for my anxiety. It’s mostly when one or both of us is just a bit wider than the seats. I think most Americans are anyway… they do make those seats pretty damn narrow. It’s the whole ‘touching’ thing. I’m not entirely sure why right now. If I had my own place and worked 100% remotely, I’d likely turn into a shut-in and have my groceries and everything delivered and only go outside for rare excursions.

I have to listen to music, and the volume gets turned up to where I don’t have to listen to people’s voices as much. Some, however, are too damn loud for their own good. When they’re loud AND racist, then even more buttons get pushed. That happened Sunday. I didn’t do anything because I was tired, but damn, I was so tempted to smack that jackass for saying racist shit.

So, people are nudging me into Dragon Mode. I’m not always very nice in Dragon Mode. The politics of fuckery going on in DC, the people talking shit on the train here, my own frustrations of finances and health stuff. Dealing with the whole “getting my degree DONE” mess. So help me, if I can swing it and survive Fall term (if I’m able to go back) and finish my degree, in December, I want to scrape up some funds and find a way to get out of town for a few days. Go on a mini vacation of some sort. Unplug from everything. Maybe not be so easily drawn into Dragon Mode.

For me, Dragon Mode is when I want to snarl at people, curl up into a ball with Portia nearby, and just rest… when I don’t want to deal with people, even though I know I have to. When the littlest shit sets me off into a bad mood. When I’m fed up, burned out, and exhausted beyond all reason. And I still keep going because I have to. I need to interact. I need to go to appointments. Find a job. Go grocery shopping. Need to ask for help at times.

It’s how my life kinda just is right now. I may have pain on any particular day, sometimes a headache, sometimes my back or my knee or… yeah… but if it isn’t completely off the charts, I have things I need to do. And I do them. Some days are harder than others. But I still try.

This year has been challenging for me. Ever since last Fall, really. My downward spiral started hitting last summer when I just could not grasp this one class I was taking. I wasn’t sure what was wrong then. I’m still not. I’m doing better, but Life keeps lobbing massive lemons at me. I’m pretty sure they’re grapefruits now. Urf. That might explain the headaches.

Well, I had a busy day today and my flame is dwindling for the day. Need some rest to get my flame back tomorrow…

Storage: Yeah… still need a little help with storage. The ongoing task I’m doing won’t pay the first round in time, so it’ll help for August, but not July. I’ll tally up and see what exactly I need tomorrow. But payment has to be in by 6pm tomorrow Pacific Time. (I’ve had to use some for food, as I ran out of FS funds, but I’m guessing between 60-100 or so, once you add in the late fees.)

Shit… I need cat litter soon… like SOON. Also, cans of food for her. I swear, if I could have a public wishlist on Chewy, I would. But I talked to them and they don’t have anything like that.

Paying It Forward: After friends, and even a few strangers, stepped up to help me get my stuff packed up and into storage during my eviction, I felt I needed to pay it forward in some way. I don’t always have the emotional or physical strength to do a lot. But helping a friend move between units in a retirement building was manageable. I spent yesterday and today helping move stuff and some furniture between floors. Most of what’s going into the new place is done. Still a few things to get done and moved down, but maintenance will be able to help.

We all have limitations. Some of us have good days where our limitations don’t affect us as much (although what we do on those good days may lead to some ugly days shortly after). This weekend has been a pair of those good days for me. It’s funny to me that I look at my own belongings and be mentally paralyzed… meaning I look at it and just don’t know how to tackle it. But then I look at someone elses’ things and I’m all, “okay, so this can go here, and we can load that, and go ahead and put that on there. No, that won’t fit that way…” you get the idea.

My friend I helped this weekend has Fibromyalgia among other health issues. Her limitations are far greater than mine. I certainly have my days where even fixing dinner and sitting upright is a challenge, but give me a task and a tight deadline and I’m in a mindset of “pain? what pain? oh, THAT pain… nah… I’ll deal with it later.” I am sore right now. That’s what happens. And besides, those desks weren’t that heavy. Once the drawers were out, they were pretty light. I can deal with the aftereffects. Helping someone move from one studio to another in a short time is worth the pain I’ll have.

Losing People: I’ve faced my own mortality on more than one occasion. It sucks. But I’m not afraid of it. Others are. Something I’ve never understood. It is inevitable, so why fear it? A friend and former coworker passed away recently. She wasn’t a young woman, but not pushing 100 either. She passed away quietly in her sleep. Losing friends and family over the years -of all ages- is something I ponder on. Everyone has their own way of doing things. My parents were “no fuss” types (even though I still want to have the ceremony and have their ashes interred in a military cemetery as my dad was a WWII Vet. It’s just a matter of getting them from a certain person in the family. Long, ugly story). Then there are others who do various celebrations of life and a funeral and all sorts of rituals.

What matters to me is to remember my mortality. And then celebrate the fact I’m still alive, despite staring death in the face. I may not always seem like I’m celebrating, but I am grateful to be able to wake up every day. Sometimes, that’s enough.

(Still scrambling to get the last of my storage rent covered… anything helps)

Ideals give us hope.
Treat others as
You
Wish to be
Treated.
Give and take.
Life is about more than just
Taking.
Help others.
As if your life
Depended on it.
Ideals of equality
The hope of sharing and love
Make us better.

(This comes out of spending a few hours helping a friend move from one independent living unit to an assisted living unit because of her fiance needing more help. For me, helping a friend who needs that help outweighs my own desire to have a day of chilling out.

The least of us gives the most… as we know the feeling of true need.

I try my best, pushing myself beyond my limits at times, to do for others what I hope is done for anyone in need. I got help from people during my eviction. I needed to give back in some way. This working to help each other is how society should function. I see too many flaws and things not functioning as they should. I can expand on this later… right now, my back is telling me to get rest. I’m going back tomorrow.)

(Yes, I’ve said I’m genderqueer/genderfluid, but emphasis on “fluid” as I am totally okay with female pronouns)

Yes, still need more help with storage before Monday and month end. Whatever anyone is able and willing to help with via PP. You don’t need an account with them with the donate button… just a credit/debit card.

I admit I look younger than I am. Most guess my age to be mid 20’s to early 30’s when, in reality, I’m almost 45. But this isn’t about looking a certain age or anything like that.

This is about being female, knowing my body and its quirks such as pain and congenital things (missing vertebra and row of ribs, FTW!! Yes, really) and dealing with doctors and medical professionals in general.

It really started, or I at least became more aware of it, when I was 17 and had slipped on some ice in the parking lot of a ski lodge in the Sierras on a group trip. I had landed on my right hip. Hard. The medical personnel there couldn’t figure it out, but there went the cost of my ski and boot rentals up in proverbial smoke. Ouch. I was ordered to stay in the lodge with the adults and other non-skiers. I hadn’t packed much of a lunch and only had a few bucks on me. I think the adults in our group took pity and got me food later, but I can’t remember. I do remember the pain and the only thing I could afford to keep my mind occupied: a deck of cards.

When we returned home at the end of the weekend, I was also sick (a bad allergic reaction to the down in the ski jacket, pillow, and sleeping bag my mother insisted I use because I MUST have outgrown the allergy. Nope). I stayed home from school most of the week and so on… lots of pain, trips to the family doc at first (don’t get me started on that asshole), etc.

Starting with that family doc, I spent the next year bouncing from doctor to doctor. X-rays, CT scans, MRI’s… PT, mild pain meds. You name it. One problem: there was never an actual diagnosis. Since I had landed on my right hip, every one of these doctors -many of them orthopedic surgeons- did tests, etc… and when nothing showed up and things didn’t help with my hip, they each did the verbal form of a patronizing ‘pat on the head’ and “well, there’s nothing wrong with your hip. It must not really be anything.” and shooed me out the door while billing my dad’s medical insurance for a lot of crap.

I went through roughly 8 doctors in that year. Then a neighbor recommended Dr. Nolan. I will mention his name. He’s retired or soon will be as he is transferring his practice. I hope the new guy is as damn good as he was. Dr. Richard Nolan was one of the best, if not THE best Ortho Surgeon in the SF/ Bay Area at the time.

At first, he looked at previous films and reports and notes and… yeah. A couple of visits, we tried a cortisone shot and a tens unit… nothing worked, as usual. ON the 3rd or 4th visit, he chatted with me and made the pronouncement, “well, there’s nothing wrong with your hip.” My shoulders dropped and my brain was inventing new swear words. Then he cleared his throat:

“So let’s look somewhere else.”

He had his tech do quick x-rays of my mid to low backin the office and after looking at them, he came back into my exam room and showed them to me.

Two. Slipped. Discs. Lumbar Region.

HALLE-FUCKING-LUJAH!!!!

By this time, I was 18, taking classes at a local community college, and a HUGE weight lifted when he said that. They were pinching my sciatic nerve down my right leg and sometimes the pain also went down my left leg.

So, why am I telling this story?

Because I still -at 44- get the same treatment from doctors. Especially male doctors.

I’ve dealt with countless MD’s and others over the years since who have behaved the same as those doctors before Nolan. What was the difference?

Nolan LISTENED. He took a step back from the accepted idea and decided to try looking elsewhere. He heard me and believed me when I said there is PAIN. It is not in my head. It is very real.

Earlier this month, I started getting this excruciating pain from my neck, thoracic and shoulders area down BOTH arms to my fingertips. The only thing I failed to mention to the doctor I saw was something I just hadn’t focused on: yes, there was -and still is at times- numbness and tingling in some of my fingertips.

But here’s the thing: I told him -REPEATEDLY- that the pain was not just my elbows (both elbows hurt… that’s be the biggest constant, but the rest of it still hurts as well) but all the way across from fingertips to fingertips. And it was NERVE pain.

I have, in the past, snapped at doctors who treat me like shit and told them, “You may know general anatomy… fine. I concede that. But you do NOT know my body. You don’t know its quirks and pains and little things that make me physically unique.”

I’ve been dealing with nerve damage for 27 YEARS. I think I know what nerve pain feels like… yanno? I know something is pinched. I went to my PT for my low back and knees on Wednesday and she pulled up the referral this doc did for what I thought would be “upper back and neck/arms” but it wasn’t. It was for “elbow pain.”

I…. but…. wait… holy motherfu… someone will pay.

Today, after getting ZERO sleep last night until dawn, I managed a few tasks, including a round of things for this one client. And I made a phone call to the clinic. I asked that they put a note in my chart to not schedule me with him ever again. She asked why and I told her about his not listening to me, the asinine PT referral, the fact that I know nerve damage, etc… and that he wouldn’t do any kind of scans to see if a disc was out of place… SOMETHING other than asking some questions. FFS. She noted all of my comments in the chart and will be passing my comments along to the people in charge of that specific clinic for OHSU. I love my clinic, I love my GP, I have zero interest in breaking in new doctors here. For someone like me, that’s no small feat.

I don’t know what, if anything, will come of it. If I’m still dealing with the pain (which, honestly, I am. It’s been around a 5-6 on the pain scale. The day that it started? 10 wouldn’t begin to come close to how bad it was), I’m to come in and see someone else. The problem is that even my current GP, as well as the sports med doc who is only at that clinic on Mondays, are loathe to do any scans or x-rays unless there was a clear point of injury.

I get that, I do. I can understand it. But I’m one of those patients who gets hurt walking down the damn street… alone. Hell, I fractured my kneecap in 2009 just by tripping on the sidewalk and landing on that first. MY KNEECAP, PEOPLE. Not an easy bone to break in general.

If I try to get another clinician to figure it out and they give me the same BS, I have the option of getting the Patient Relations office involved. The girl today even said it’s an option. I want answers. Pure and simple. I want them to acknowledge and understand that some of us patients know and listen to our bodies pretty damn well. I just need them to listen to me and help me figure out what’s going on. I’m not asking them to bring world peace… just help me solve an issue with some nerve pain.

So, what does this have to do with being female? A lot. Especially when it comes to male doctors, female patients are dismissed even today as being “hysterical” (and I’m not talking about funny hysterical either) or not knowledgeable.

I would love to make Robin William’s movie Patch Adams mandatory viewing with essay for medical schools. Teach humanity and humility along with anatomy.

Well, pain meds and muscle relaxant are kicking in and between those and the lack of sleep last night, I need to curl up under the covers and get offline.

Public transit has space set aside for disabled and elderly. But I routinely end up next to able-bodied people who use those seats because they’re “convenient.” There are signs all over the area explaining the priority for these seats, but they go unread. Ignored.

Since I use a cane, I use these seats. Unlike those in a chair or with a walker, I could use other seats, but I walk a bit slower and am unsteady on my feet while the train/bus is in motion. So I would likely miss my stop if I sat anywhere else. The train doors don’t stay open that long.

I wish able-bodied people would respect the need for people like me who need those seats. They don’t need them.

I do try to work past/through my disabilities, but this week pushed me to the limits. I had four paid tasks through TR with three of them being furniture assembly. Apparently I have more reviews than people who charge double what I do… hence me getting more of those tasks. I don’t mind. I did up my rate to an even $30/hour, though. I get 70%, so I don’t see ALL of the $30. I also had PT on Wednesday and a meeting with my Voc Rehab coach tomorrow.

It isn’t easy doing physical labor… even just small amounts of it. So doing everything I’ve done this week has been rough. But I’m still able to move. I’m sore, but I can still do stuff.

With the pay coming in from these tasks, I have most of my storage rent. Still trying to gather the last bit and then work on earning for next month.

One thing I enjoy while doing TR is that I get to meet people I likely would never get to meet otherwise. It’s always interesting, even if the pay isn’t stable enough.

It’s been a long week and now I’m working on scheduling posts for my Press and working on other websites… and job hunting. I’ll be around.

The love of a cat. Purring on my chest. Napping. Happy. The vibration of a purr can heal many things. Anxiety and so mich more. No matter if they weigh 4 pounds or 14, the love of a cat resonates through her purr. My therapy in the midst of pain, stress, times of hesitation and healing the scars of my own history. The purr of my cat against my heart… the world melts away and only peace remains.

If anything below has already been said earlier this week, my apologies… I’ve had a crazy-weird week.

I survived GearCon with my sanity intact. Mostly thanks to certain people setting me up with my own sleeping space so I could retreat to a quiet place when needed. Which I desperately needed. To those people, I am in your debt and I intend on reimbursing you for the room. I know they aren’t cheap. Even those little ones. After four months of sleeping mostly on cots and rollaway beds, having a couple of nights on a real bed was heavenly.

I made my black waist cincher to wear at con on Saturday. I finished it that day and wore it a fair chunk of the rest of Saturday. It’s fairly thin plain tanned leather that I did a second layer to give it a bit more body, painted black, drew gears in silver and bronze Sharpies… and will be adding more later. It came out pretty damn well considering I only starting working on it the Thursday before.

(pics here)\

The Front

The Back

I enjoy working with leather. It’s a pricey hobby, but I have fun with it.

I had appts Wednesday and Thursday and have been strongly encouraged by my GP and my therapist to start creating a local in-person group for those of us with C-PTSD from domestic/sexual abuse. I won’t discuss it too much here, as it’ll be a peer-run (non-clinical) confidential group.

I also met with my VR trainer and we’re getting going on redoing my resume, etc and switching gears to finding work in research instead of social media. SM is over-saturated here in PDX, hence why I’ve had shitty luck in even getting interviews. Research isn’t AS saturated… likely not saturated at all, honestly. I may have a better chance at solid employment there.

Now, here’s an interesting thing. I’ve pondered about it on FB and have been told that this is actually very possible. A few months back, I fucked up my SI Joint (sacroiliac joint) on my left side. It’s right next to the tailbone and has affected my walking ability among other issues. I was already having issues with my right knee, and then this… but on Sunday, while at the con, I was room-sitting our hospitality suite while others were off doing things. I’m fine with this… I actually enjoy just hanging out and watching the room. I got up to make a sandwich (yes, we had gluten free bread), and on my short walk back to my chair, I had a severe sharp jab of pain right in that spot next to my tailbone. I couldn’t move that hip, could barely put weight on it, etc. One girl was also in there and I had her set my sandwich down on the other chair and then help me over the last few steps. I managed to get pain meds, etc… but before they could take effect, everyone returned in one big blob of happy people… some noticed I was having problems and asked if I needed anything. They got everyone else mobilized to set the sofa-bed back to sofa form and my stuff was carried over there, pillows set up, and 2/3’s of the couch set up for me. That’s pretty much where I stayed most of the rest of the day. I got a ride home and stayed in bed for about 95% of the next two days and nights.

By Wednesday, when I had a doc appt for other things, I had almost no pain on the left side. I’ve since wondered if that pain on Sunday was my SI joint basically resetting itself. That hip still doesn’t like sitting in any one position for too long, but that’s my body for you. I will have sciatica until I die… not much can be done for it. But no more excruciating SI pain. I’ve been told that the SI join can reset itself back into place… it happens… not for everyone, but it can… and I have a feeling that’s what it did for me. I’ll run it by my PT when I see her next.

I’m also having issues with the very computer I’m writing this post on. Oddly enough, it’s ONLY on Facebook and no other site. And on FB, if I’m using the other computer or my phone, it’s fine. I try to type a status or comment and get a few letters in and the cursor pops back to the beginning. I even shut the damn thing down a couple of days ago to let it rest… fired it back up about an hour ago and it’s still doing it. Closed the window, opened a new one… yup… still.

I’m also trying to scrounge up the remaining funds for July storage rent. I have about 130 or so, and the bookcases will be sold shortly, but that’s only another $50… I need 280 plus late fees. I’m working on it, but I’m just not getting anything else coming in. I may have a lead on a little part time (maybe under the table) work for a friend and fellow writer, but I need to email him. As my post from earlier this week stated, our internet was down for a couple of days and that threw me off track with emailing people and all that jazz.